Monday, January 14, 2013

New comprehensive Down syndrome program

from News 8 WTNH by Jocelyn Maminta:
It is a one of a kind program and Connecticut Children's Medical Center came up with it. It's a comprehensive outreach for families with children with Down Syndrome.
Louisa Knapp is among the hundreds in Connecticut born with down syndrome, a genetic disorder that affects a child's development.           
Louisa's family is among a growing number discovering the newly launched Comprehensive Down Syndrome Program at Connecticut Children's Medical Center.
"How's your hearing," asked Dr. Greenstein.
Dr. Robert Greenstein heads up this first of it's kind program in the state.
"This would make available in a timely manner the kind of services that are necessary to improve the health of the child and therefore reduce the anxiety among the family," said Dr. Greenstein.
A huge void until now, with services specifically tailored to address the special needs of a patient with Down syndrome which can be misdiagnosed, delaying treatment.
"Can I see your teeth please," asked Dr. Greenstein.
For Louisa, a stuffy nose led to surgery after Dr. Greenstein recommended a specialist.
"He managed for her to be seen by someone who is now with this program who is very comfortable with kids with down syndrome and understood the unique needs and she had her tonsils and adenoids removed and it was life changing for her," said Sheryl Knapp, Louisa's mother.
At this visit, the concern is Louisa's hearing, a common problem among patients with Down syndrome.
"She often says I can't hear you or say that again. I don't know if she really can't hear or if she's just saying it," said Knapp.
Getting her hearing tested with an audiologist is now on Louisa's schedule.
"There's an expectation that you have to find out how much you can but it also comes with an emotional upheaval as well for families," said Dr. Greenstein.   
What's offered here is a big relief for families like Louisa's, looking for a central resource to meet all the needs for children with down syndrome.

For more information, visit

No comments:

Post a Comment